In our series showcasing Sweden as a country that likes to pretend it’s a white knight in shining armor for civil liberties while actually doing the exact opposite, we’ve arrived at the so-called PKU register. It’s a DNA database of the entire population born after 1975, used – among other things – for criminal investigations.

It sounded good. Starting in 1975, all hospitals would take a blood sample of every newborn baby to store in a vault for medical research, specifically to test for and track Phenylketonuria (PKU), which is an inability to metabolize phenylanaline (an indirect component of almost all diet sodas, among other things).

Medical research is good, right?

Following the high-profile murder of Anna Lindh in 2003, something odd surfaced with how the police confirmed the suspect killer. It turned out that police investigation laws, the laws that determine how police can walk in and seize evidence deemed relevant to an investigation, had overridden the medical secrecy for the PKU samples – and police had just walked in and seized the suspect’s blood sample, taken when he was born for medical purposes, to do a forensic DNA match. This was not the first time the medical blood sample database had been used as an investigative DNA register; it had been going on for a long time under the radar, at least since 1998.

So… going from being an archive for advanced medical research under consent, the vault had been repurposed by reinterpreting existing laws: the Swedish police now has a DNA database of the entire population born after 1975 at their disposal. No other country that I’m aware of has that comprehensive a DNA database of practically the entire sub-middle-aged civilian population.

It also highlights the dangers of database mission creep, when something collected for one purpose gets repurposed for something else – and that every piece of data collected by governments must be viewed in the light of its worst possible abuse.

Rick Falkvinge

Rick is the founder of the first Pirate Party and a low-altitude motorcycle pilot. He works as Head of Privacy at the no-log VPN provider Private Internet Access; with his other 40 hours, he's developing an enterprise grade bitcoin wallet and HR system for activism.

Discussion

Mårten

July 19, 2012

If I remember correctly the police could have gotten the sample directly from the suspect but in order to save time choose to use the PKU register. This illustrates how little the medical confidentially is worth once a government agency decide they need access.

When someone talks about a DNA register intended for forensic use, actual DNA does not have to be saved, only a digital ‘fingerprint’ (DNA-profile) from each sample is required. That fingerprint can be compared with another sample (e.g. from a crime scene) to see if they match but it is difficult to extract other genetic information. In the case of the PKU register, actual blood cells are saved. It effectively contains the entire genome of everyone born after 1975.

Colin

July 19, 2012

Hmmm,
Given that the stated reason for setting up the database was medical research, it’s more than a little odd that the samples were not anonymised when they were first taken.
Oh, wait a minute, then they’d be no use to the police…

anders

July 19, 2012

Depends on what medical research you want to do. It gqn be very useful to have the samples identified if you want to link the occurrence of different conditions.

anders

July 19, 2012

Not “everyone” actually. Since this incident, a lot of people have opted out, for themselves or for their newborns. It is possible to do so. Maybe bad for science, but that’s the polices fault, then.

If this is true (sources?) then what is the big deal really? I think it’s great that they use DNA to solve crimes. Who cares what it comes from? Are you (the writer) so afraid of people controlling you that you need to react to the police using this method? I see no problem what so ever. If you are a law abiding citizen, then you have nothing to worry about.

We also have what you call “social security number” openly available for anyone. Even the last for digits. Why? Because we have nothing to hide. And they can’t really be used for anything anyhow.

I vote for a more open and free world. Stop being afraid.

dencrypt

July 19, 2012

Databases will not go away. What do you know how the political climate will be in 50 years from now? Would you trust the government if the ones pulling the strings would be a North Korean state? By having databases of people makes them inherently criminals by default. Everyone is a suspect. That is not a society I would like to live in. And databases are ALWAYS misused. People are not perfect and having that kind of information at your disposal can make anyone become malice when you realize the power you have.

The Social Security Number is NOT available for everyone. The four last digits are protected by law since IT CAN BE USED FOR A LOT OF DAMAGE.
If I have your Social Security number I can do a LOT of damage to you economically and personally. I can ruin your life basically .

Whay do you mean by “protected”? The last 4 digits are in no way secret. Anyone can ask the Tax Authorities for them.

harveyed

July 20, 2012

Well… they had registries of religion in the Netherlands pre-WWII for matters such as to know easily how to give people proper burials. Then WWII came along and Holland was invaded. How do you think those registries were used then? Yep, they used the lists of jews to send to the death-camps. Very easy and efficient.

We already have SD in swedish parliament. While they may not be in any position or intent as of yet to do something similar – we must always assume that there are always some extremists who have intent of using these databases for their own goals.

Patdick

October 27, 2012

” If you are a law abiding citizen, then you have nothing to worry about.”

Ohhh the cowardly and entirely bullshit “if you have nothing to hide” argument. I vote for a world with less people like you. And what a great world it would be.

elgreco

July 19, 2012

I’m open to participating in a biobank for medical purposes , but this development is a bit scary.

I’m thinking of opting out of it; you can send a letter demanding destruction of your blood to the administrative authority. Could a mass exodus from the biobank be a sign to politicians that this is not OK?

Anonym

July 19, 2012

Is it possible to “opt out” of the DNA register when your child is born, or have them destroy an existing sample?

Anonym

July 19, 2012

Oops, I posted to soon… so it IS possible to opt out Any chance someone will start a campaign and streamline this process (similar to uturkyrkan.se)?? And in the mean time, where and how do one go about to get their DNA records removed?

Anonym

July 19, 2012

Seems I posted too soon… So it IS possible to opt out. Anyone care to share the ins and outs on how to get an existing DNA record removed?

You need to know your mother’s personal identity number and the hospital where you were born. You don’t get to choose whether your sample will be destroyed or just anonymised. Mine was anonymised. It took a couple of weeks before I got my confirmation.

Back in 2008 when political youth groups were trying to look as if they cared about privacy I think MUF were running a campaign telling people how to leave the database.

You need to know your mother’s personal identity number and the hospital where you were born. You don’t get to choose whether your sample will be destroyed or just anonymised. Mine was destroyed. It took a couple of weeks before I got my confirmation.

Back in 2008 when political youth groups were trying to look as if they cared about privacy I think MUF were running a campaign telling people how to leave the database.

ANNM

July 19, 2012

I think that the precedent from the 2004 tsunami is even scarier. The government wanted to be able to quickly identify Swedish victims, but since the PKU database was only for medical research they had parliament change the law, temporarily, so that they could access it anyway. If they feel that they have the right to do that, who the hell knows how they are going to change it in the future?

Rick,
It is even worse. Until 1993 parents where not even informed about the existance of the pku registry. Thus every swede born between 1975 and 1993 (when Dagens Nyheter found out about it) were not only registered but were so in secret!

Since 1993 parents are told about the registry and that it is for medical research only.

Is there any country left, either in Europe or elsewhere that still actually respects civil liberties, privacy, the principle of habeas corpus etc., and hasn’t yet thrown away these fundamental protections over some exaggerated panic caused by terrorism and/or file sharing?

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Stephanie Daugherty

October 1, 2012

“…every piece of data collected by governments must be viewed in the light of its worst possible abuse.”

Subtract “by governments” from that — Every piece of data collected, whether it’s collected by governments or not, should be viewed in this light. Even if the government doesn’t have it yet, the presumption should always be that they will someday.

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